luzmarianoceda

[luzmarianoceda]

I forgot to post oops...

Letter "J" stands for jealousy

J is for jealousy…

Among all of the difficult emotions that follow you after a SCI, jealousy may be the hardest hitter. It most certainly was for me, and I imagine I’m not alone. It’s particularly challenging because when you’re disabled most of everyone you interact with is not disabled, serving as a huge reminder of what you have lost. Everywhere you look: reminders.

For me, and perhaps others, jealousy breeds resentment. I have these reminders of how my life used to be around me all day everyday and I wanted it back soooo badly!

I get this feeling of jealousy when I look back on old videos of myself as a Paraplegic when I had hand function and full arm function, where I could drive my manual chair with absolutely no struggle in the world it always makes me feel bittersweet. Don't get me wrong I am glad I can move my arms and move a manual wheelchair however it makes me yern for my old function when I was a Paraplegic I miss being able to pick Amity up off the ground, I miss leaning to give Amity a kiss

I miss the way I played football 🏈 I would have to sit on the sidelines as I watched people do a task that was once so easy for me to do, but watching football practice everyday and yearning to play as I once had made me resent over what was once my favorite activity. I wasn't sure if I had enjoyed seeing people play the sport or wish I could play it honestly Probably both.

I get jealous when I cannot do something that I was able to do once with ease, I get jealous seeing Amity do something that would take me several minutes.

Now, however, I‘ve come to understand how to acknowledge and process those feelings, and I’ve found my greatest tool to be grateful Because remembering all the great things I have in my life makes me feel less jealous and remember that the people who can do those tasks in seconds are helping me, the people who can play football are going towards there biggest goal and trying there best while I'm trying to get to my biggest goal, the tasks I could do so easily will take time to learn but the same exact people can help me get there.

I'm still incredibly grateful that I can move my arms, still able to discuss my feelings with the love of my life and be around my loving family and friends who make me feel so supported!

If you’re struggling with feelings of jealousy and resentment, I would suggest you to really lean into asking yourself “Why?” Could that jealousy be rooted from insecurity? Frustration, perhaps? Acknowledgement is the first step and can help you understand why your jealous.

And if you need a little help I will not judge you no one should therapy is a great option and can be really beneficial! Saying yes to therapy is not bad!

See you for letter "K"

[luzmarianoceda]

"I" stands for Intimacy don't worry I won't get into full detail!

Intimacy is a major thing in the disabled community, now keep in mind Intimacy doesn't just mean doing the "deed" I'll spare the details

Intimacy can be engaged as in hand holding, hugging, kissing, cuddling, words of affection etc.

Me and Amity had to navigate different ways of how I could initiate intimacy after I became paralyzed twice

In 2022 November me and Amity started dating I was able bodied and we did the normal things of being in a intimate relationship, but we hadn't had you know something that starts with a "S"

Over the course of time I got paralyzed in 2023 from a horrible car accident I was a low level Paraplegic basically meaning my legs and my lower core were paralyzed and for the first year me and Amity engaged with each other with more intimacy, after the first year of my Paraplegic injury me and Amity on Valentine's Day decided to do the deed if you will say, of course it wasn't the "normal" way of doing it however we used my skills and she used her skills to allow it to happen, using tools and medications to raise my flag if you will. (most detail I'll probably go in)

However as we progressed we found more ways to be intimate this helped us engage with each other in ways we never had before, it was such a freeing feeling for me when I learned just how comfortable Amity was with me, she never thought "I couldn't do it" because of my disability even when I became a Quadriplegic we found more ways to "do it"

In a way that wouldn't cause me AD and if I did experience AD we would figure out what was causing it!

Amity has made me feel very comfortable, we found several ways to initiate intimacy throughout our day and within caregiving

When showering she often gives me a kiss, or I caress her thigh, she runs her fingers through my hair just those small moments make me feel super comfortable with her.

Small moments of intimacy and navigating through tough times can be really beneficial and eye opening to people in the SCI community and Disabled community.

These photos show various moments that me and Amity share intimately.

That concludes letter "I" see you for letter "J"

[luzmarianoceda]

"H" stands for heat intolerance basically meaning us folks with an SCI cannot control our body temperature while this may sound moderately annoying to people who don't have heat intolerance

It can be incredibly dangerous if not treated quickly! There's a little hint at letter "O" but one problem that comes with heat intolerance is overheating! This is a major deal! I don't have the ability to sweat so when I stay out in hot weather for too long I'll overheat which makes my AD act up and get loads of symptoms, so from there we have to pour water on my head and hands

And then if it gets bad enough we have to drench my entire body with water and get me out of my chair put a cold rag on my forehead! It's no fun, in contrast to overheating is when I become too cold! Yes this also means I don't have the ability to warm myself back up!

This can also become dangerous if I don't take precaution! My hands will become numb and I shiver like crazy!

Although some Quadriplegics and paraplegics don't experience both some can become to hot while others are to cold and some can be in the middle I'd put myself rather in the middle most of the time I'm alright however if I stay somewhere to long I can become too cold and too hot!

Stay cool & warm!

See ya next time for letter "I"

[luzmarianoceda]

Hey everyone 👋🏻 Luz here, Typically I don't write post outside of the educational post however this is important!!

Everyone I have a ventilator... As much as I was holding this off I finally decided to be put on a (possibly) permanent ventilator.

Let me explain hi I'm a Quadriplegic C4/C5 complete to be exact but I wasn't always a Quadriplegic I used to be a Paraplegic in 2023 when I was involved in a bad car accident during my 1 week coma I was on a ventilator and intubation tube after my coma and recovery I was left with a tracheostomy scar it had completely healed shortly after a year after becoming a paraplegic I started experiencing symptoms of my hand becoming randomly paralyzed, and me overheating

But the scariest symptom of the condition I was diagnosed with ( spinal stenosis) was the breathing aspect because of the condition that would soon render me a Quadriplegic is it constantly made me out of breath and it would soon take away almost all my breathing function before I went into my coma February 28th.

Me and Amity would end up calling (911) 9 times because I had almost completely suffocated in my sleep 💤 oh my God that was not fun and not enjoyable

Shortly during my coma I got a tracheostomy (again) on March 9th, 2025, now I should've got a ventilator then however I put it off but I didn't avoid it I still had a bi- Pap mask, a non- invasive ventilator and a Pulse oximeter that would track my Oxygen saturation ( if it went below 70% or 65%) I would immediately have to go to the Hospital if not worse the ICU if they found out I had a respiratory infection!

Now after huge procrastination (not really) I got a ventilator I'm now a part of the permanent ventilator crew lol

This ventilator will help me sleep easier, will allow me not to sound hoarse and weird with my non-invasive ventilator, & will allow me to keep my 28% breathing function alive (lol)

Thanks for reading, Luz ❤️

[luzmarianoceda]

Just some random achievement for me but I've used my manual chair for Four consecutive days! Which is big for me, not only Because I'm getting in tons more practice in the manual chair so I can hopefully take it out on trips, and secondly because the adaptive features on the chair (button that helps me go back, head strap + extra mats) can allow me to be in the manual chair and be more independent in my manual chair anyways that was just a Small update on my large achievement! - Luz ❤️

[luzmarianoceda]

"G" is for Gastric Problems

Although most people don't think that stomach problems connect with an SCI it actually does

I sit down all day (well besides going to sleep) I believe the reason why I get stomach problems is because of me sitting most of the day & my organs physically being slower

Most of the time with medications I can compact these symptoms however if the medication decides it doesn't want to work I end up having tons of symptoms of : Acid reflux, stomach pain etc.

Take May for example I had just eaten a really yummy dinner 🍽️ but then immediately after I started to feel extremely nauseous, I went to the bathroom and started gagging for 10 minutes and it was not fun thankfully I didn't throw up and was fine.

And there has been days where I objectively blew up the bathroom & had active diarrhea in the middle of the night or have woken Amity up in a sweat because I almost shit myself... Sorry Amity 😬

However these symptoms are not the worst of SCI the worst symptoms in my option would be Letter "O" & letter "S"

Sometimes it can be very tiring and annoying 🫩

Thankfully I have many ways of readjusting in my chair and medications to help these symptoms!

This concludes letter "G" come back next time for letter "H"

[luzmarianoceda]

Keep coming back with new medical equipment lol 😂!

[luzmarianoceda]

A full video discussing why this is a very big life change!

[luzmarianoceda]

Me and Amity literally just put this head strap or "head holder" on my chair and oh my God hello freedom of my floppy core! Weird how tables have turned I'm suddenly using my friends @luz65170 medical equipment...

Other photos in this post really show my horrible posture and honestly I don't have much because Amity would heavily readjust me every time we took a photo, and I would have to sit in a very certain way just to keep my head from dipping, this is a huge game changer!

[luzmarianoceda]

Today is Letter "F"

"F" stands for family and friends, after substaining a spinal cord injury it's often not uncommon to feel a a sense of loneliness or have depression or mental health issues

I know that having my friends and family there to support me throughout my recovery was a major stepping stone for me as I learned to adapt to my new life as a paraplegic (before I became a quad), since I was going through depression and Suicidal Thoughts I thought no one wanted to be around me however

Learning to allow people to help you can be rough but if your family is willing to help out in ways you think are best, naturally allow them to lend a helping hand.

It was nice coming home from my injury, finding out just how much everyone helped me out!

Family and friends are the best to have around during your injury even if you don't know it ❤️

That concludes letter "F"

[luzmarianoceda]

Today is Letter "E"

"E" stands for employment; huh how does that have anything to do with spinal cord injury?

Well employment actually plays a really big part in the SCI community and Disabled community, Employment can be very difficult for those of us with physical limitations and accessibility issues

Most people with an SCI often have mobility issues so to find A job/ employment can be very difficult especially if it's physically demanding, there are some tasks that I physically cannot do so most employment companies would pick someone who could do the physical demand of the career however our opinion wouldn't even exist, we're just like an object in the background.

Another issue that comes up is accessibility since *most* of us with SCI use some sort of mobility aid (Wheelchair, power - Assist wheelchair, Walker, Crutch 🩼 Etc.) it can be very challenging to get around, if the work place is not accessible then there is no way of getting around.

Thankfully employment is getting in some ways better for those with disabilities!

That concludes letter "E" see ya next week!

All these photos of my other friends represent the other jobs they work ( Emmie works as a content creator & used to work on handling packages 📦) doc on the left of the photo works as a public speaker, writer, creator and writes notes at a hospital 🏥Emmie in the bottom right of the photo works as a police officer, doc works on creating content and does public speaking.

[luzmarianoceda]

*I'm late sorry!*

Today is Letter "D"

"D" Stands for Depression, after someone sustains a spinal cord injury they often develop mental health issues, one of them being depression

After sustaining my spinal cord injury back in 2023 I went through depression I'll tell you it's not a fun feeling

And I honestly thought of ending it, however that is dark but it's important to be open about it thankfully I didn't and now know that with friends and my family's support that I can learn to love Life & enjoy it while be paralyzed!

Although mental health is very hard it's also important to take care of yourself during that time please with everything if you start noticing your going down a dark path try to look for calming activities or try therapy trust me therapy is super beneficial especially after a Traumatic event

The most important thing to know is your not alone 🫶🏻

This concludes Letter "D"

[luzmarianoceda]

Today is Letter "C"

"C" stands for catheter, reviewing back on last week's letter which was "B" these ones actually go together! , because of our neurogenic bladder we need a way of relieving ourselves.

My bladder is completely paralyzed so I cannot go to the bathroom normally this typically means I use a catheter fun fact I have used approximately 4,389 catheters (Estimated number) since my injury! there would be more if I didn't have my supra pubic & ,2023 September I was using 4 catheters a day until September 16th 2024 when I went on a larger schedule since my bladder size decreased and the doctors thought it would be best I ended up going through 16 catheters per day until March 9th, 2025 when I got my supra pubic catheter now I only need to change it once every two weeks and so far I've gone through four changes! In fact there are several types of catheters

Supra pubic, intermetent, condom catheter's just to name a few!

I have what is known as a Supra Pubic Catheter which basically goes above the pubic area and there's a little balloon on the end that you fill with water to allow it to stay in, all I have to do is open a cap and from there I can relieve myself!

However most of the time it involves sticking up a tube up you know where, when knowing how to catheterize yourself it makes it that much easier, I never had a big problem when I was a paraplegic since I have a male counter part however it can be harder on female

Now I cannot put a catheter in myself because of the lack of my (another hent at a letter) Tendodesis so I went the supra Pubic route and it has been way easier!

Catheter's can really go a long way of helping us stay the healthiest we can be!

That's it for letter "C" see you next week!

Posted May 5th, 2025

[luzmarianoceda]

For every letter of the alphabet I'm going to talk about an issue or a part of SCI that correlates with that letter

Today is Letter "B"

The letter "B" stands for Bladder & Bowel when someone gets a Spinal cord injury most likely they'll get what is known as a "Neurogenic Bladder" a Neurogenic Bladder & Bowel specifically means that we don't have control over our bladder and bowels

This basically means us people who have a SCI can have accidents which can mess with our confidence and our daily living

I have had my fair share of a constant accidents and it SUCKS

One I had active diarrhea all over myself on the way to a hotel IN PUBLIC... Yeah not my best moment

It'll be tough but thankfully there are ways to manage it those we'll be found in letters "R" & "C"

That's it for letter "B" I'll see y'all next week.

Posted April 28th, 2025

[luzmarianoceda]

Today I'm starting a series one of which I didn't think I would however I want to bring awareness to SCI.

since SCI is such a big topic that needs tons more awareness I'm doing a Alphabet series

For every letter of the alphabet I'm going to talk about an issue or a part of SCI that correlates with that letter

Today is Letter "A" The letter "A" stands for Automatic Dysrflexia, Automatic Dysrflexia is essentially a reaction your body gives you below the level of injury when something is in discomfort!

I am a Quadriplegic however I haven't always been a Quadriplegic, when I was a low Paraplegic I didn't deal with Autonomic dysrflexia at all but after experiencing symptoms of AD in October of 2024 because of spinal stenosis

I learned that AD can get bad quick, since I had never dealt with it before it was extremely terrifying! I had a pounding headache and I was shaking a lot I couldn't find the reason why AD was present for that I had to go the ER and had a mini stroke that's how high and dangerous my blood pressure got!

AD comes up for me whenever my bladder gets to full or I need a weight shift etc.

AD is a blessing and a curse without it I'd have the inevitable fear of constantly have issues however it's a blessing because I can treat those problems with AD

This concludes letter "A" see you next week!

Posted April 21st, 2025

[luzmarianoceda]

I've been in a coma for a month and I'm fully ready to explain everything about spinal stenosis and what it affected for me.

Cervical spinal stenosis is a narrowing of the spinal canal and/or the spinal nerve root passages in your neck. When this narrowing occurs, your spinal cord and/or nerves may become compressed and cause symptoms such as pain, numbness, tingling, and weakness in your neck, shoulders, and extremities

If cervical spinal stenosis causes spinal cord compression, your doctor may refer to the condition as cervical myelopathy.

The image I'm showing y'all is my cervical region this image shows a side view of a cervical spine. There is a severe narrowing of the diameter of the spinal canal at C4-C5 (the 4th slide)

I started showing symptoms of spinal stenosis in September of 2024 and it progressively got worse and worse I needed back surgery somewhere around November or late October to fix my stilts and screws in my lower thoracic region because it has came lose during that my hand became randomly limp and had no sensation I had a neck collar on for two weeks after, shortly after before November I had overheated and developed pots attacks! ( A very serious condition)

Shortly after to wrap it up short I ended up having a mini stroke because of pots attacks and the horrible pressure on my spine, then in February of this year spinal stenosis got so bad it made me a Quadriplegic (C4/C5) but my full injury including para & Quad (C4 - C5 - C8 - T8 - T9 - T10 - T11 - T 12)

I've barely recovered (from waking up) I'm slightly talking and doing well thankfully! We're hoping no more pressure develops on my spine!

Thank you all for the support ❤️‍🩹, Luz

Posted March 31st, 2025

[luzmarianoceda]

I typically don't write serious posts but today is the day where I want to openly talk about some things that have been going on in my life...

If most of you don't know I am a paraplegic I've been a paraplegic since September 1st 2023, I became a paraplegic from a bad car accident and it left me without feeling below the belly button but other than that I was ok it was until 2024 where everything started to go down hill, somewhere in 2024 I had to have back surgery since one my metal rodes/ stilts came lose and damaged my T8 & T9 vertebra completely.

Making my sensation point completely different I cannot feel from my bra line down typically the midline I can only feel my upper core this was a bit scary until September of 2024 barley after my 1 year anniversary I started experiencing symptoms of limp hands, fainting, overheating (to the point of needing a spray bottle and going into the ER which btw I can sweat)

It started to become alarming... we went to the doctor several times but they identified it as "unidentified" me and Amity have been setting up plans on how we'll tackle this, because of this condition spinal stenosis it may turn me into a Quadriplegic ( paralysis of all four limbs), sometime within March with no triceps, no core, no tendodesis "basically limp wrist" no sensation from my trach scar down so basically I will only have a bit of my arms and my head which is not good!

They say I have a chance of being trached and being on a tracheotomy for quite some time which if y'all don't know I was previously on back in September of 2023 (was on ventilator and tracheotomy for a week) they expect a month at littlest...

It has been a very stressful time for me and my family please keep me in your prayers 🙏!

- much love, Luz❤️

*My friend chilly,s hands for reference of tendodesis*

*My friend doc who is a C3 incomplete quad for Reference of a high quad*

*Donny who is a C1/C2 Quadriplegic again for reference of high quad*

Posted February 19th, 2025